I am 46 and was dx with Inflammatory Breast Cancer Stage 3 Grade 3 with lymph node and skin involvement in April 2012. I had bone, liver and lung scans shortly after dx and they came back all clear, and I have had chemo, left mx and lymph node clearance and rads. I am still on Herceptin but not hormone treatment as the cancer was ER- PR-. I had a complete response to chemo in that after op they found no live cancer cells in the tissue removed.
I have had pain in my right hip for the last 2 months which is getting worse and spreading a bit to my lower back. It feels like a stitch from running only lower down, and feels quite different to pulled muscle pain, the general joint pain you get with Docetaxel, back injury pain, upset stomach cramps or period pain. It’s quite local to my hip i.e. not higher up on my right side so don’t think it’s liver. Paracetamol and nurofen are taking the edge of the pain a bit but its still there. Its worse when I stand up after sitting or lying down and when I walk about and I am now limping and finding it difficult to stand up straight. I don’t have pain like this in any other bones.
I had a hip xray in November a couple of weeks after it started which came back clear but I am seeing oncologist on Monday for the results of the latest Herceptin heart scan and he told me to mention the pain again if I still had it.
Has anyone else had pain like this? What sort of follow-up did people get in terms of scans etc?
I too would like more information on this. I was dx in Feb 12.
I have pain in my lower back and buttocks, pain in the hip when walking too. I have had a CT which was clear and a DEXA scan that showed thinning bones. I am on calcium and vit D supplements. Letrozole too, started in Sept.
I have not had a bone scan.
I really don’t want to keep having tests as have had many for years relating to other conditions, but would rather like to know if there is a pattern of pain or symptoms that would point toward bone mets.
If so then I will get it investigated.
Hi squeaky mouse and winter socks,
same question here… Winter socks, have you mentiothis’d our pains to your GP or oncology team?
Squeky mouse i will send you a pm, hope you don’t mind.
Hiya ChristineP
I did mention it to my breast surgeon when I was first diagnosed. But she did not seem concerned.
I have not told my GP yet as we are tying to wade through my other issues, gynae stuff and gastro consultation to come. I have Coeliac disease and the malabsorption of calcium has resulted in thinning bones.
I really don’t feel like I can face any more investigations.
I am not even sure who to tell! I think that is part of my problem! Where to start?
It is all making me feel very down.
What symptoms do you have?
hi wintersocks I have exstensive bone mets in my spine,left hip and pelvis.The pain you are describing sounds like the one I have in my right hip,but after many tests it is NOT bc at all but arthritis.I have had arthritis since my teenage years but tax and letrozole seem to have made it worse.We forget we had aches and pains before bc and always think the worse.Hope yours turns out to be nothing more than just aches and pains
Hello Sqeakymouse. Bone mets pain seems to vary a lot from person to person. I too have extensive mets in my spine,ribs, thorax and pelvis the worst area being my pelvis. But before I actually knew I had bone mets I would nto have said that I knew or suspected that is what my pain was coming from. I think that you are worried that the disease my have spread but as someone said above it could be lots of things and not necessarily bone mets. For example I had an MRI scan done recently but the pain I was havig was not from more bone mets but from arthritis brought on by old age! ( am an 62). I think you need to discuss your worries with your Consultant/doctor on Monday when you go back for your heart test results and perhaps they will arrange a bone scan for you if they think it would help. There are certainly plenty of good pain meds out there that can help you. Fingers crossed all will be okay bit if not we are here for you to help you. Fingers crossed for you. Valo
Hi
I was told that I neededto watch out for any aches and pains that were unexplained (eg. not down to over-energetic gardening) ot didn’t go away. My bone mets pain was a lowerr back ache, with some rib pain too. This was mostly due to muscles having to work extra hard around the affected vertebrae. Even knowing that I have another met, my onc isn’t sure that the pain I have now is due to it - she will study my next ct scan to look for progression.
I would defnitely mention it at your appt, so you can have another scan. Bone mets can be difficult to spot, but if the bone has deteriorated, then it is more likely. My onc said that they can only be sure if it responds to treatment of they do an (invasive) bone bioppsy.
Good luck with your appt.
I’ve had RA since I was 36 - 62 now. Arthritis has spread to hips and other places, and I often wondered how I would tell the difference from this and bone mets if I ever get them. I think my problem would be that I would ignore any bone or joint pain assuming it was arthritis - but how would one know without a bone scan? You will probably be ok though squeekymouse. We sometimes worry too much.
Although you have had a reply from the bone Mets expertexpert (Val), I thought I would just add my penny’s worth. I have had bone Mets since diagnosis in July 07. Had no pain from them at all then. Since then I have had pain on occasions when there has been pressure on nerves from the collapsed bone but plenty of other aches that have been down to wear and tear, side effects of drugs or just doing too much. There are so many variables and it is so difficult to draw the line between keeping an eye on any possible areas of concern and feeling like a hypochondriac!!! I would just mention it to onc and take it from there. Good luck and if by any chance it is bone mets rather than arthritis/wear and tear/medication, you can always get loads of support on the bone mets thread.
Hi Squekymouse,
I am 45 also her2+ I also had a good response from chemo,all my cancer regressed turning it back ito Pre-cancerous cells, we thought it was gone WRONG.
I have secondary cancer, I’ve got it in my bones as well as other places but I have got itin my spine/pelvis to me it feel’s like arthritis very painful very stiff,I couldn’t stand longer than 5 minutes it was just too painful,so I have just had radiotherapy on my spine, I think it is a little bit better but not much,I am in a wheelchair now.
When my spine was looked @ it has collapsed in two places and my spine is now bent,which isn’t good for clothes cos my body is twisted now.
I wish I had something good to say but I haven’t but I would’t say it was like a stitch pain more like a ache.let me know how you get on.xxx
caron_ caron. I remember your name from a long time ago. Sorry to hear cancer has returned after you thought it had gone. When we’re you diagnosed with bone Mets??
Thanks everyone. I saw onc and he thinks its unlikely to be bone mets as the x-ray in November was clear (as was the nuclear bone scan I had back in May), but he told me to make an appointment with my GP so I will do this later this week.
Sorry Squeakymouse to hear of your worries.
I was told I had extensive bone mets in the beginning, then not so many after a Petscan. I have never had pain but every time I have a scan the ONC says my bones are abnormal. It is very strange how you can have pain without bone mets as ladies have mentioned above, and not have any with them. I really don’t understand it and just keep my fingers crossed I’m pain free for as long as possible.
Claire
Hi squeakymouse
good to hear your oncologist thinks it is not bone mets, and hope your gp can help find out more. And thank you for raising this topic (I am waiting for my nuclear bone scan to check whether my pains are dodgy)
wintersocks - yes, I agree, sometimes it is hard to think about who to ask what, having so many different people involved in all this medical treatment. It doesn’t make life easier doesn’t it? I now usually ask my gp when in doubt, as he is the only one who really has an overview off all the different medical stuff that I have gone through. I have rib pains now, hoping it is nothing, but have been referred to a nuclear bone scan now, so trying not to think about it too much.
Amysmum - I am very sorry to hear you have bone mets. I remember your worries a little while ago. How did you find out it was mets, did you have one of these bone biopsies? What treatment are you having for your bone mets? I hope things go well.
Sorry to hear you are having to go for a bone scan. Did your onc suggest this or your GP?
I think as you say it is difficult to know who to tell (I am seeing 2 consultants ) other than my breast team. I think as you say it is a good idea to raise stuff with the GP and keep checking in with the onc team if there are real worries.
sometimes, I just get embarrassed at keeping returning to my doctors with issues, just before bc I has an abdo MRI scan because of bleeding, thankfully, only ovarian cysts seen.
It would be nice to have just a year away from hospitals and doctors!
But I suppose If I have pain I ought to tell someone…
WSx
Good news - clear bone scan. I was told that ribs than sometimes start to get painful even a year after radiotherapy in the area… so that could be an explanation for my pains.